Creating an engaged community of people around your adult with special needs

people sillhouettsOne of the four key planning areas for parents who have a child that will always need assistance with their care is to create a community of caregivers.   For many of these, that means a guardian for personal care and a trustee for money management, but those should not be the only people in your child’s life.  Think of all the different things you as a parent do for your child – you feed and bathe and shelter them, of course, and you make sure they have health insurance and medical care, but you also do things like the following:

  • search out activities to do
  • buy clothes and toys and personal items
  • decide (or help) on clothing and hair styles
  • keep an eye out for new resources
  • notice how caregivers and therapists treat your child and make changes if there are problems
  • keep track of how your child feels and acts so you’ll know if a doctor’s appointment is needed
  • keep company with your child and interact or play with them

. . .  and this is only a very short list of the things parents do for their children, and that, depending on your own child, you may continue to do into adulthood.

When you think about the community of people you want to build around your child, these are the kinds of things that your community will be doing for your child.  Some people may visit and play, some will be more task oriented, and some may never see your child in person but will be on the lookout for resources and ideas for others to use. You don’t need a large group of people who can be the full time caretaker, you need a group of people who all contribute to your child’s life in a variety of ways.

Here are some tips on creating your community:

  1. Ask people if they would like to stay in touch with you and your child.  Many people who have worked with your child develop a fondness and would be delighted to keep up with your child in the future. If you welcome them into the group and give them a way to stay in touch, you may be surprised at how fast your child’s community grows.
  2. Update everyone regularly, and include both major events and little day-to-day details. Make sure to share lots of pictures.  Staying in touch isn’t about giving a quarterly report, its’ about keeping the group informed about your child’s life, which may include big life or medical events, but also includes things like going to the store to buy clothes, or having a great day watching movies at home, or even being sad that grandma’s visit was over.  Little details will keep people informed of how your child lives and what they enjoy or think about. Our family uses a Facebook group for this, which makes it really easy to share pictures, but you can do email groups, or periodic mail, or any other communication technique that you like.
  3. Give people specific permission to be involved in your child’d life and to communicate with the people who are with your child the most.  You want everyone to know that not only is it ok for them to contact you, but that you really really want them to contact you if they have an idea or a thought or suggestion.  Make sure people know that even if they are not the “official” legal caretaker, their participation is welcome and invited.
  4. Ask for help sometimes.  Be sure to ask for help in a range of ways.  Give people ideas about what to do to help – even if its’ as simple as asking for birthday cards be mailed to your child.  If you’re trying to come up with activities your child might like, ask the group for ideas.  If you want someone to come by and visit your child if they’ve been stuck at home for a while due to an illness, ask.  If you’re having trouble finding a new therapist that takes Medicaid, ask if anyone would be willing to make some phone calls.  In other words, let people know what you or your child would like them to do, and most of the time people will happily jump in to do it.

The more people who know your child and are around in their life, especially as your child grows older and the parents begin to transition out of day to day caretaking, the better off your child will be, and the more at peace you will be that your child will stay safe and happy.

 

If you are ready to start working on the legal supports needed for your plan, give us a call at 833-RED-BOOT (833-733-2668) or email legal@parkercounsel.com for an appointment.  We’ll help you put together a strong plan that fits your family’s unique circumstances.

With attorneys serving families in Austin and Central Texas, Western Mass and the Pioneer Valley, Portsmouth New Hampshire and the Seacoast.

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